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Yes, it's worth the effort
Last week during a trip from Waterville, ME to Norwalk, CT , I experienced a near miss of a multi-car accident. Even though it was over 6 hours into the drive, my reactions were quick and decisive. If this had occurred 14 months earlier, before CPAP, I would have most certainly been involved in a 6 car pileup. Aside from an improved quality of life, I now have the peace of mind knowing that not only am I not going to kill myself, but more importantly I am not going to maim an innocent person whose only mistake is encountering me on the road in an impaired (yes, that's what it is) state. In the 14 months of using CPAP, I've had it in over 60 locations. It's a hassle but I like to invoke the line that American Express made famous...."Don't leave home without it" It goes with me everywhere. I know that many of you struggle and swear at the machine, but don't give up the fight. It's worth the effort
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Replies to This Discussion
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Permalink Reply by Diane Dennis on
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I use a BiPap, my pressure is 22, and I am 100% compliant.
First night of using it, I slept the night through (before and up to the last night before using it, I was up, out of bed, every single hour).
The day after using it that prior nigh, I was no longer falling asleep in front of my computer.
Same day, I was able to get up with my son after a year of not being able to (and it is VERY important to me to be able to up with him before he goes to school).
Within four days, I was driving distances again (had imposed a no-distance-driving restriction on myself).
Within one week, I had driven off the island more times than I had the entire 4 years I've lived here (anxiety and panic attacks, as soon as I'd drive over the bridge a ton of bricks set down on my shoulders, and immediately lifted once I'd come back across the bridge).
Within four months, anxiety meds cut in half, and depression is not anywhere near so prevalent.
No more waking up gasping. No more snoring. No more bed head from tossing back and forth.
Today, 5 months later, the pain from my Fibromyalgia has lessened (still there but less).
There are many more benefits I have experienced (not the weight loss yet but it'll happen, I need to find a way to lessen work and go to bed before 1:00 am every night/morning).
Do I hate the indentations in my face from the mask, yes.
Do I hate the soreness I get occasionally on the bridge of my nose, yes.
Do I hate working at staying untwisted with my hose, yes.
Do I hate the minor mask leaks, yes.
Am I embarrassed to be seen in it, yes (although that is lessening).
Do I hate the thought of dying in my sleep and my 17 year old son finding me, YES YES YES!!
I will remain 100% compliant because the very possible/probable alternative (death) is unacceptable...
Yay, everyone who has been able to stick with it!
Chris: keep at it if you can. If it's anxiety, ask for a minor anti-anxiety med to help lower your anxiety as you get used to it. If it's constant air pressure, ask for a BiPap (blowing air only blows when you breathe in, it "backs off" when you exhale). If it's uncomfortable just try wearing the mask an hour a day (not sleeping, just during the day/evening, to get used to it) ... whatever you have to do, if you've been prescribed there's a reason. And the part about "walking around in a daze" and "staying off the streets that you're driving on"... Two things... One, it's not as simple as that. It's a very strong possibility of death in your sleep from "side-effects" of Sleep Apnea. And two, be careful, for other people, for yourself, and for the chance that you'll be in a whole lot of trouble if you fall asleep, cause an accident, and it's found that you have a sleep machine and are non-compliant (some medical problems. i.e. uncontrolled Epilepsy, will either cause your license to be revoked, and/or cause you to be major-league sued for driving when you knew you had a preventable problem).
Mack: What is a "skin-lined trach"?
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Permalink Reply by wayne fleming on
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Hi LEO
I Have just been using my BIPAP machine now for 4 months and i totally agree with you ,since i started using this treatment i have a marked difference in my long distance driving and reaction time , i am much sharper and focused than i have been for years my whole life has become better in so many ways i also totally recommend this treatment.
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Hi Mike
I was dubious about the machine four months ago but i can tell you i can now get up early in the morning on my own and watch the sun come up on my porch...Priceless
All the best
Mike C (at the Beach!) said:I agree and I am still so new to APAP. Just 22 days in, I am now able to even ride my motorcycles again even while taking heart meds that made me to non functional to drive ANY type of vehicle! Not just that, but even if I only get 4-5 hours of sleep, I am FAR more able to function and not feel like I spent the night out drinking or taking drugs (whatever). It is honestly beginning to look like a whole new world. But I am suspicious and fearful this won't last? If the alertness and "awake" feelings continue, I will feel 20 years younger and even my disabilities will be FAR less painful and will be much more manageable. I can dream anyway.....(bad pun I suppose)
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Permalink Reply by M'Lady Wench on
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I take mine with me everywhere I am going to be overnight. My partner has had one for about 15 years and when I started having trouble, he was there for me to figure things out. The funny thing is when I fall asleep in my chair, it is my kids that send me to bed! LOL I am glad I have my machine.
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Flying with a PAP machine should not be a problem. The machine is a medical device and as such covered by the Americans with disabilities act. It does not count against your carryon luggage allowance.
I once even used the machine DURING a long overnight flight, although that was very tricky, and required a special electrical hookup installed ju st before my flight. I don't think they'll do that anymore because it held up the flight. I then tried a battery arrangment for a long overnight fight, but the battery was too heave y to make that a practical alternative
One other problem. On the trip with the special electrical installation,
I handn't yet disconnected when the plane landed and switched over power to the ground connection. Bad move, because the sudden surge fried the machine, or, more accurately the humidifier, but we had a difficult time diagnosing
it.
Sarah
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Hi Chris, I too have had my share of poorly informed sleep industry people with frusterating lack if proper care. I started going to AWAKE meetings in nyc and on the island and have met some of the smartest ,kindest , Know what they are doing sleep people ! Than here on this forum they have educated me to a point that I can participate in my treatment and know the choices. I was almost out of the game for good 2 years ago. It is a struggle well worth figuring A solution for you.
Come to nyc awake ( march 2) its 6 blocks from pen station talk to dr Park and some of the dentists a solution can be found. Good Sleep,Chris
Chris said:
After about a year of dealing with a cpap machine Ill never go back to it again. I think I would rather walk aroud in a daze from lack of sleep than go back to the nightmare of cpap and usless doctors. I am glad to see it has worked out for some of you but untill someone finds a alternitive that works for me you might want to stay off the streets I drive on.
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I'm with you Dr Jones. I am a 50 something RN, who has been advised to have UP3, maxillary and mandibular advancements, septoplasty, turbinectomies, septoplasty and probably sinus surgery. Besides the untold fortunes ($$$$$) it would cost, I worry totally about the risks since my BP on six meds is still rarely under 180/100. I have talked about the trach with my cardiologist and my IM doc, and both said that it would be the better option. Looking forward to finding out more.
Mack D Jones, MD, SAAN said:I know where you are coming from. PAP didn't work for me either and I didn't learn what was going on until I recovered enough from surgery to learn what most sleep doc don't know yet. A simple skin-lined trach saved me. It was my "reserve chute." I pulled it just in the nick of time. Oh, and I agree, some of those so-called sleep docs are in some cases can be worse than useless, they can be flat-out dangerous.
Chris said:After about a year of dealing with a cpap machine Ill never go back to it again. I think I would rather walk aroud in a daze from lack of sleep than go back to the nightmare of cpap and usless doctors. I am glad to see it has worked out for some of you but untill someone finds a alternitive that works for me you might want to stay off the streets I drive on.
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We sleep apnea sufferers are, unfortunately, vulnerable to quacks and scam artists. Therefore, we MUST acquire as much solid information from reputable sources as possible and develop our ability to think critically; to separate the wheat from the chaff. This is ESPECIALLY true for unvetted articles and products that one finds on the Internet. Keep in mind the motivation of the person or website promoting a particular product or cure. Do they stand to benefit financially or otherwise? Always remember that one person's testimonial is NOT evidence that a certain product or technique will work for you.
That said, there ARE legitimate sources to which you can go for reliable information. It just takes some investigation on your part, since they are not always the loudest or most vocal.
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I'm so glad it's working for you! I've been using CPAP since September of last year. My dad and younger brother both use them. While I haven't noticed any great increases in energy, I do notice that I sleep the entire night and I don't flip flop in the bed. I've gotten used to moving the hose with me in my sleep if I turn over. If I try to nap at home without it, I wake up groggy with a headache. SO I even if I nap during the day, I use my CPAP.
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